Caregiver Bill of Rights

10 Rights Every Caregiver Should Have
caregivers-rights

We are a nation that loves a good movement: the civil rights movement, the women's movement, the environmental movement. As our society faces a growing older population, and we'll have more parents to care for than children over the next 20 to 30 years, there is a new movement afoot: the caregiving movement. With every good movement there is a list of rights -- those ideals that become the tenets upon which to build a better future. With that premise in mind, I present the Caregiver Bill of Rights.

1. The right to have balance between caring for my loved one and caring for myself.
This includes asking for extra help when needed (even if my loved one objects), maintaining routines and plans as best I can so as to not lose myself while on this caregiving journey. It also includes accepting help provided to me by family and friends so I do not feel like I am all alone.

2. The right to receive a financial break or tax credit for caring full-time for my loved one.
In the same way Americans are granted tax credits for dependent children, I should be granted tax credits for caring for parents who are dependent on me for their constant care.

3. The right to work for an employer who understands caregivers.
As part an aging workforce, more and more of us will face the life event of caregiving while on the job. I have the right to work for an employer who will provide me with the employee assistance to maintain my work performance and productivity, my own health and wellness, and support for my loved one without fear of reprisal or dismissal.

4. The right to expect the nation's legislators to acknowledge the valuable service I perform and to enact policies that not only support those with the illness or disability but support their family caregivers as well.
This includes acknowledging my role as a first responder in the long-term-care crisis in this country. According to research, family caregivers of older Americans represent $450 billion in societal value in the unpaid care we provide, and we need to be recognized for these collective and individual efforts.

5. The right to expect that my loved one's medical advisors and health care professionals will recognize my critical role as part of the primary and long-term care team.
I should expect that these health care professionals will communicate with me without violating my loved one's privacy rights so I can best care for my loved one. Especially when it comes to transitions of care, I become a critical player in helping my loved one -- the patient -- transition from hospital to home or other facility and to maintain their health, medication compliance, and other aspects of care that will decrease hospital readmissions.

6. The right to easily find resources that will help me in my caregiving journey.
Whether these services are provided by public or private organizations, I should know where to turn to get the help and the education needed at whatever stage of caregiving I encounter.

7. The right to not take on the financial burden of caregiving all by myself.
I should not have to put my financial future at risk to care for my loved one today.

8. The right to make choices that will help me manage my stress without feeling guilt or depression because I am focusing on myself at times rather than solely on my loved one.
This includes the right to take a break -- for a few minutes, a few hours, or a few days. The need to seek respite in my caregiving duties is essential to my ability to continue caring for my loved one long-term.

9. The right to expect my close circle of friends and family to understand my caregiving role and to support me in any way they can.
This includes the right to expect that I can reach out to them so I do not feel alone. Also that my spouse, my adult children, my siblings, my coworkers, and my close friends will lift me up when I am down and help me keep going on this caregiving journey.

10. The right to expect "life, liberty, and the pursuit of happiness" even while so much of my time, energy, and attention is going to care for my loved one.


about 3 years ago, said...

I am going to being taking care of a friend who has been diagnosed w/lung cancer and pancreas cancer. He also has other diabilities that are being addressed by the Veterans Admin..due to related service to our country. How should I...or who should I apply to to be compensated for the in home care services??? thank you for your guidance


almost 4 years ago, said...

I especially agree with #2 - altho it wouldn't help my taxes cause all I get is SS anyway, so really can't even file......


almost 4 years ago, said...

Sherri: Thank you... All good points.